What it’s like to have a child in a wheelchair

When you see a child in a wheelchair what is the first thought that comes to mind? Do you think about the "poor kid" who is “confined” to a wheelchair? Or how it's tragic that they can’t walk? Or do you steal a glance at the parents and think about how hard it must be for them?

I’m not telling you what to think, or asking you not to think those things. The truth is, it does suck when your kid has physical challenges — both for you and for them. Life can harder, more expensive and you need a lot of trunk space in your car.

But I’d like to offer a perspective that maybe you hadn’t thought of before: Wheelchairs often provide freedom.

Syona got her first wheelchair a couple of weeks ago, thanks to our Easter Seals funding. It’s a stroller-style wheelchair designed to provide more support than a commercial stroller and it allows her to be in a more upright position. Despite the fact that it's a heavy, bulky piece of equipment, I love it.

Syona used to dislike walks, complain when we would go to the mall and whine all the way to the park in her old stroller. Because she can’t sit up independently, she would always be leaning back and wasn’t properly supported. But now she actually gets excited to go for walks. She can sit upright and see what’s happening around her. She can interact with her world in a way that a two-and-a-half-year-old should, including causing a total ruckus.

Recently, we were out shopping and I actually had to be careful of Syona pulling things off the shelves. I was so happy when she reached out to touch a bathmat and looked at me and said “boo” (it was blue). We were at one of our many appointments and almost missed our floor because Syona was determined to hold onto the elevator rails so tightly. It was great because she never would have been able to do that in her old stroller.

I met a mom at one of Syona’s therapy sessions last week. She’s an awesome lady with two gorgeous kids. Her son has special needs and uses a wheelchair stroller exactly like Syona’s. We immediately started chatting about how great it was to have our kids in a piece of equipment that actually provides them with some freedom.

Sometimes it’s easy to see a wheelchair as symbol of failure — a failure to walk, failure to be independent, failure to be whole. Wheelchairs, like any other piece of equipment, remind many of us that we (or our children) need help. But the truth is that just because Syona has a wheelchair, it doesn’t mean she won’t ever walk. It just means that she needs a wheelchair right now.

I expect that Syona will walk. It’s a goal we work toward. It’s something that she’s motivated to do with the assistance of her walker. It’s an expectation that I really do hope that she will meet. But, like the expectations that any of us have for our children, at a certain point it is out of my control. So she works toward it because she wants to. I just provide the opportunities, support and the occasional lollipop as a bribe to get her moving.

But if Syona’s primary method of mobility is something other than walking down the road, or she needs a break once in a while because it’s too hard, well, that’s what her awesome new wheels are for.

How do you provide your children with independence?